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May 18, 2013 at 4:38 am #21280
Hi There All You Fellow Caregivers,
Just checking in as it has been awhile since I have posted and it seems like a long time since we have heard from others.
My husband’s melanoma has continued to progress. He finished last round of IPI on March 28th and we went back four weeks later (April 25th) for PET scan and brain MRI. Tom’s scan showed new tumors although all of the new ones are either on his spine or soft tissue or subcutaneous. The brain MRI showed three small tumors (5mm – 7mm) which is a first and not one we wanted to experience. He had the three Gamma Knifed this past Wednesday and seems to be recovering well from that. His oncologist gave birth four weeks early, an event for which we are happy for her but the timing was poor in terms of the progression of Tom’s disease.
The pinch hitter oncologist was fabulous though and sent us on our way to get a neurologist consult on the brain tumors and then wanted us to see a melanoma specialist as he thought it was too tough a call on whether you would call IPI a failure after four weeks or if we needed to wait longer. We see the melanoma specialist this coming Monday so we are anxious to hear what she has to say.
A question — I know Laura (DadZGirl) can answer. My husband has tumors on his spine one of which caused a compression fracture of the vertebra and has left him in rather significant pain. He had 10 radiation treatments that ended March 27th and at our follow up appointment with the radiologist, he reported one had shrunk by 50 percent (the one that caused the fracture) and one by about 20 percent. He also felt it was too early to say whether the tumors would shrink further and thought 8 weeks was a more accurate time to assess them. So my question is: have others who have had palliative radiation to spine tumors seen relief from the pain? And if so, how long did it take? It may be that Toms’ pain is caused by the compression fracture and not the tumor.
We also thought about Whole Brain Radiation and voted for Gamma Knife even though we know it is possible there will be other brain tumors down the road. There has been several topics on the Stage IV forum of late that were very timely for us. My question would be: anybody who did Gamma Knife multiple times?
It has been a bit of a rough go for Tom these last few weeks. Had side effects of Ipi (fatigue, rash, itch, itch, itch) and couldn’t swallow for four weeks because his esophagus got radiated too. Preparing food was quite a challenge especially for someone who did not earn the Betty Crocker Homemaker of Tomorrow Award (I think that really existed in my youth). But he is back to normal eating and the fatigue and rash have for the most part gone away. Won’t bore you with details of constipation. I am pretty close to starting a spreadsheet on this many stool softeners plus MiraLax plus suppository equal victory over Constipation. You guessed, it. On a lot of painkillers.
So enough about me. How are things going for the rest of you?????
annMay 18, 2013 at 12:15 pm #60764
You didn’t really talk about you. How are you holding up? Jeez, you really have been through the wringer. I just posted something about brain mets and systemic agents and there is some hope with IPI, but truly radiation is the best course of action. And some folks have gone through the gamma knife more than once. I wonder if you couldn’t look into the IPI/PD1 trials that are opening up. Seems like a good prospect for many. I have known the palliative radiation has worked well for spinal mets and other bone pain problems. The pain relievers may be causing the constipation of course and I would seek some alternatives to the standard opiate ones, like tramadol or some of the NSAIDS/tylenol/advil combos.
You need to take care of you and I hope somehow you are finding the time. I was thinking about when I was caregiver to my mother and how when she was better and I could move on, I felt this void in my life. I had plenty to do with smallish kids and a farm to run, but there wasn’t that little nagging feeling about what I could be doing better for her. So please take time out for Ann and get a massage or doing something fun.May 18, 2013 at 2:00 pm #60765AnonymousGuest
Sorry to hear about your husbands pain. It takes a big toll on us caregivers to see our loved ones in pain. Catherine’s sage advice to look after yourself too is right on.
Rachel had one compression fracture and several vertebae mets with some associated pain. The vertibraplasty (terrible spelling…I’m an engineer so I’ve an excuse) stabilized the fracture and the heat generated by the curing of the cement also killed some of the met and the radiation did the rest. She was pain free from the bone mets in about a month and back to lifting heavy things in the garden. There was no further pain that we could associate with the old bone mets, which still appeared on the CT scans but did not progress. The radiation oncologist called them “clinkers”.
Rachel’s was a mucosal melanoma which seemed quite responsive to radiation.
Hope this helps and take care of youself too.
JeffMay 23, 2013 at 1:03 am #60766dkmcParticipant
I am not sure about this but I wonder if a kyphoplasty might help with the pain from the spinal fracture. Sounds like that is what they did for Jeff’s Rachel. You could always ask. The fracture will very slowly heal but there is a lot of pain associated with it. Try very hard to give yourself a break-it is so exhausting & you want to be there for him the best you can. Take care, KarenMay 24, 2013 at 6:31 pm #60767TamilsParticipant My father had palliative radiation for spine mets, although they hadn’t gotten so large as to cause fractures yet. His back pain had gone away by the end of the two-week radiation period. Unfortunately the radiation damaged the valve in his stomach that keeps food and acid down, so he has had continuous heartburn since. We have been trying to find something that helps that. I hope your husband’s fracture can heal soon and his pain diminish.May 25, 2013 at 12:06 pm #60768 That is a darn shame about the side effect of heartburn pain. I know there are over the counter drugs and prescription drugs that can help alleviate this. I hope you can find a remedy that helps.May 25, 2013 at 10:47 pm #60769 Hi Tamils,
Tom also had a radiated esophagus from his spine met radiation and had great difficulty eating for about three weeks. His radiologist prescribed something called FIRST Mouthwash BLM which helped him eat. He has lanocane and two other solutions mixed together and in essence, numbs the esophagus. He could eat soft foods using it but really couldn’t get anything down without it. He is back to eating anything so it doesn’t last. Here is a link to some info on it:
http://www.drugs.com/pro/first-mouthwash-blm.html. I would ask the radiologist for a prescription.
I was never sure if our insurance didn’t cover it or if the co-pay was just really high (it was $40.00) but I think my husband would say it was worth every penny of it.
Thanks to the rest of you for the love — I can feel it. We really do have a lot of support from our neighbors, friends and family so I really do not feel overwhelmed. The beat has continued to go on, though and this was a challenging week. Tom just got out of a 4 day hospital stay. He was in terrible shape when he got there but he feels better now than he has in weeks. He had been vomiting most everything he ate, had nausea, constipation, and pain, pain, pain. They admitted him to be sure his brain wasn’t swelling from the Gamma Knife (it wasn’t) and to get the pain management, constipation, and other symptoms under control. Used pain pump for about 36 hours and then they determined what level of pain medication he really needed and he stayed for another 36 hours getting it in pill format and he feels so much better, it is amazing. He had been having new pain in the area of where he had been radiated and where his first Wide Area Excision was located which we thought was likely a new soft tissue melanoma as there was nothing to see or feel in that area and the day he got admitted, darned if he didn’t develop the lesions one gets with Shingles. So he has Shingles to boot. I will not tell you the constipation story, but suffice it to say they spent 48 hours trying to get poop out of that boy and finally succeeded this morning. They had xrayed his stomach and digestive system and it turns out his bowels were full of stool. I told him I always knew he was full of sh** and now we have documented proof.
There was a new PET scan and brain MRI done and we get the details on that next week but the hospital oncologist already told us there has been more progression.
Thank you for your support guys; I will keep you posted.May 28, 2013 at 12:29 pm #60770
Shingles are the worst! On top of everything else. Ann, I hope you are getting some good support there on the frontline. Pain management is so important too, keep on top of it and don’t let it break through when possible. You are certainly in our thoughts here and keep us posted.June 11, 2013 at 12:26 am #60771crburton28Participant Ann,
How is your husbands pain now? My husband is going to get radiation for some spine nets this week. I just wondered how many doses your husband received and how long before he noticed a lessening of pain.
CarlaJune 11, 2013 at 4:27 am #60772
My husband had 10 radiation sessions to shrink tumors on his spine one of which caused a compression fracture on T5 vertebra. I mention that because I think the compression fracture was what was giving him the most pain.
By the end of the two weeks of treatment, he was able to sit comfortably for an hour or more and could tolerate standing and walking for up to 10 minutes. (He could hardly stand or walk before the treatments). After four weeks, the tumors had shrunk by 50 percent and pain was subsiding. By six weeks, he was climbing stairs toting laundry baskets and by eight weeks, he was really almost painfree. The radiologist told him he thought the fracture would have to start healing before the bad boy T5 would quit hurting.
My husband said to tell you “definitely worth it.” Good luck to you both!June 11, 2013 at 4:06 pm #60773crburton28Participant
That is fantastic. I told my husband and it lifted his spirits! He starts tomorrow, the pain relief can not come soon enough.June 12, 2013 at 2:43 am #60774Sandalwood36Participant Kyohoplasty was a god send for Bob. He was in horrific pain after falling and suffering a compression fraction in T5 (probably would have eventually fractured anyway due to tumor). Procedure was quick and painless, and nearly completely alleviated his back pain within 2 weeks. Only wish that was his biggest problem… Talking to docs about TPN tomorrow. It’s probably bobs last hope to build the strength required for entry into a pd1 trial. Requesting prayers. Peace, love and positive thoughts going out to all.June 12, 2013 at 11:17 am #60775AnonymousGuestSandalwood36 wrote:
JeffJune 12, 2013 at 10:06 pm #60776
I ditto Jeff; “you got ’em”
Wishing you and Bob strength and hope!
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